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DS with CP. No improvement in speech. Fed-up and drained

(12 Posts)
chinchi Wed 07-Oct-09 19:26:04

DS (2), was diagnosed with CP in July. He has been having physio since December, and had his first session of speech therapy in July.

Today he had a combined session of both, and Im feeling quite mixed up about it all. He wears AFOs and Piedros due to stiffness in his left leg. He can now stand confidently in them, but has no idea how to walk on his own, although he is capable of walking a few steps if someone holds his hands.

The physio was so pleased when she saw DS standing and waiting for her to come (he wasnt standing at the last session), and the look on her face said it all, but then she has always had faith in him and has never failed to help me be positive about his progress. The icing on the cake was when she said he would be walking very soon, and would have expected it to be sooner, but he is so happy to crawl about rather than to test new waters.

My biggest concern was his speech development, or lack of it. He understands everything that is said to him, in both English and Turkish (DH is Turkish). His signing has come on well, even though it has taken time and can now sign 6 things, will shake his head for no, and can tell me if he needs a wee or not.

His last speech therapy was in July, and since then, has not said one recognsisable word. I asked if this was likely to improve and I didnt get a straight answer, and have been given sheets upon sheets of other signs to learn. She is thinking of introducing cards showing pictures so that he can associate them with giving them to me to show what he wants.

She said the MRI tomorrow will show how extensive the damage is, and mentioned portage for when we move to the area. It has just all drained me. I have spent weeks focusing on his walking, yes with positive results, but now I almost feel back to square one with getting him to sign. He is very vocal with his babbling, but has a high pitched type of squeal when he is trying to tell us he wants something. He doesnt even attempt to say yes.

The hearing test conducted in August came back clear, although it was mentioned he had slight glue ear which should clear itself up, and to be re-tested in December.

He has hit the terrible twos with force, and is going through a stage of 'dont talk to me unless I talk to you'. He is even in a strop with baby DD most days.

I often wonder when things will become easier, or if they will. Its all such a huge worry.

I realise there are people worse off then ourselves, and the outlook is positive, but as a Mum I guess its my perogative to worry. I hope nobody minds the long rant

anonandlikeit Wed 07-Oct-09 19:59:43

Hi Chinchi,
You are allowed to worry, & rant!
There are v wise people on here (even SALTS) who i am sure can give you better advice than me, but IMHO from what you ahve said he does seem to be making progress with his language skills, even if speech isn't there yet.
Picking up signs & a good understanding is language development. DS2 was completly silent at 2 (no babbling or anything) & his understanding was significantly delayed too.

It was a slow process, language is a complicated thing, but I believe signing really helped ds2 go on to develop speech.

BTW I'm not surprised the SALT didn't give you a straight answer, they very rarely do.

The terrible two's is always a PITA add in to that the frustrations of CP & it can seem a whole lot worse... wine & chocolate were my saviour... although be warned I am now the size of a house grin

anonandlikeit Wed 07-Oct-09 20:00:22

Oh & well done for the glowing Physio report

chinchi Wed 07-Oct-09 20:15:21

Thanks anon Im more of a sherry girl myself (yes at the age of 24!), and the Dairy Milk were polished off at the beginning of the week!

I am very impressed with his progress. He picked up the sign for 'car' and was doing it without me realising for ages. His left arm is lazy and was only using his right arm to sign, bless him.

I can feel his frustration though, and I am very often guilty with giving into him when I know what it is that he wants. I think my biggest shock was being told in July that his next appointment would be October, and me being cocky and thinking 'ooh. he'll be fine come then', when the reality isn't that at all.

There are times when the tone of his voice is coming out correct (he can say 'I dont know' perfectly with the tone of his voice) yet cant get the words out, if that makes sense.

It just all seems like one very long road, and when the path ahead looks clear, there's always a big ugly monster that comes and blocks the path

anonandlikeit Wed 07-Oct-09 20:26:12

It is a long road (omg i've turned in to cliche woman) but you are still getting used to it.
DS is 6 now & things have evened out, we have a clearer picture of wher his main difficulties are.
Appnts are more run of the mill & both ds2 & I are very used to all the various people in our life.
A dx like Cp isn't the chicken pox, (crapp for a while but soon over it) its long term but the early days are harder. It does get easier.

Muscle tone has a big part to play in speech, has your SALT given mouth/face exercises for your ds to do?

Oh & I have been known to knock back a sherry or 2 myself when the wine runs out.

chinchi Wed 07-Oct-09 21:09:40

I poured myself a glass of what I thought was sherry, only to find Id picked up the Baileys bottle- bad times!

To be honest, I often look forward to the appointments as its nice to ask, ask and ask in the hope of hearing something good. It gives extra hope IYSWIM and gives me a chance to let go of the weeks worth of scenarios of 'what if' that Id built up in my mind!

Im just in the middle of a huge tizz after realising DS qualifies for funding for nursery next September, and I have no idea where to start with viewing nurseries etc! I had been so focused on his walking and speech that everything else didnt exist!

She never showed us any exercises, but Ill ask at the next appointment.

Does your DS now have clear speech? For me it seems that DS has something stuck in his throat that stops him from making the correct sounds, and he does try his best!

Phoenix4725 Wed 07-Oct-09 21:30:36

I have a ds with no speech due to brain damage butno Cp , but was told recently h will never talk but also that it was unusrual so fingers crossed for you.Ds uses signing took whil or him t catch on with it but once he did the feeling of sheer relief on my part and his that we found way to commnicate

anonandlikeit Wed 07-Oct-09 23:07:10

yes my ds does now have clear speech but still has problmes with word finding & structure & order.
With my ds2 it was a combination of muscle tone problems & development delay, his expressive language was always more delayed than his receptive language.
TBH I think the muscle tone was less of a problem, i think the developmental delays hindered speech more.

DS2 also had problems with sucking & eating which were also to do with muscle tone.
Has your ds had any feeding problems?

moondog Wed 07-Oct-09 23:30:37

Hi Chinchi
So sorry you are feeling drained but what is obviously a very stressful situation.
The SALT wasn't able to give you a clearcut answer because she doesn't know. I'm a SALT and we can't see into the future. smile

I work with many people with CP and there are many different things going on. The language might be there, in a person's head but not able to come out clearly due to the effect of the CP on the facial and neck muscless.

Or sometimes there may be more global language issues (such as difficulty understanding or formulating complex ideas) which , added to the speech production difficulties, mean that using speech is a huge challenge.

Our remit as SALTs is to provide an effective communication system as quickly as possible as we obviously can't just take a wait and see approach and hope speech will come.It might, and then again it might not.

What we do now is that using sign and symbol pictures (such as Makaton and PECS) can really help understanding and expressive skills. But that still means that we, the adults around the child, must put in a lot of hard work.They won't sign if we won't sign so that is what you must do as much as possible.

Look at the following links:

Makaton website

Sing and Sign do lovely products suitabel for any child

Picture Exchange Communication System

Great news on the physio front. smile

chinchi Thu 08-Oct-09 06:39:34

Thanks ever so much moondog. I wasnt crticising the SALT, or at least I hope it didnt come across like that! She was a lovely young girl, and her gentle approach with DS was fab. I think just as a Mum, I expect people to tell me the answers there and then!

The only problems DS has had with feeding etc was reflux whilst in SCBU, and the fact he was tube fed for 5 weeks, but I believe that was due to weakness, as he didnt attempt to breastfeed on a few occasions. He has never had any problems with swallowing.

He has picked the other signs up very well and took me by surprise. I think maybe the problem lies with me, when in fact DS is capable of signing, but I see it as a huge task.

Just about to wake DS up to go for his MRI scan. My mind is all over the place I think!

Phoenix4725 Thu 08-Oct-09 06:45:26

good luck for today.

Might be worth calling salt asking he about makton courses I found lot easie to learn when could see someone else doing .Oh andsomething spcial is always fun way to learn for you and ds

moondog Thu 08-Oct-09 07:55:09

I know you weren't Chinchi(and even if you were, that's perfectly ok too.Of course mothers want answers!) Yes, it's much easier and more fun to go on a course. You will learn so much. E mail or ring your SALT dept. and ask about them.
Something Special is brilliant too.

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